End of 2016 Updates

The Latest...

http://curegm1.org/dec-2016-cure-gm1-update/ - Check out this end of the year post on the CureGM1.org website by President Christine Waggoner

Here's an image of how much has been raised so far towards our goal. It's amazing. You can always check http://curegm1.org/ and look at the bottom of the website to see this fundraising thermometer and it's progress.

Holiday Charity Concert

We had our GM1 Holiday Benefit Concert on December 10th. The Concert was a success and we were grateful for the support, it was a lot of fun! Here's a summary video, with bits and pieces from the night!

                              

Here are the links to the other songs Marilee Kay and Company did: 

MarileeKay_JollyOldStNick

MarileeKay_Army

MarileeKay_SweetAngels

Children who passed away from GM1 in 2016

We want to honor these sweet angels and their families. I know they are greatly missed. There are likely many more children that have passed away from GM1 that we don't know about. 

Rayan Louchahi 1/13/2015 - 4/23/2016

Jaxson Reish 7/28/2014 - 6/16/2016

Pablo 1/2014 - 7/2016

Maite Ugarte 5/1/2014 - 11/2/2016

Porter Heatherly 9/14/2012 - 11/10/2016

                               Kierra 9/1/2015 - 12/28/2016

Update on Evan 

Evan has been doing well, he's had a few colds and fevers over the past few months, but overall is healthy. He is still moving around well, falling a little more often than he used to and is even worse when he is tired, but most of the time is still very active. He is a lot of fun and loves to laugh at everything!!

Update on Eli

Eli is such a sweet, cuddly boy lately, but he has been sick a lot these past few months. 

 - In October his finger got infected and was swollen. He was put on antibiotics. (We think it was from him digging in the sand at a local lake.

 - In November he got sick with upper respiratory stuff, it hit him pretty hard the cough, congestion, fever. He had to miss more than a week of school and then was put on antibiotics again because he was getting a sinus infection.
 - In December he got sick again with more cold, congestion and fever. One night his fever got up to 104 degrees, but we quickly got it to go down and he had to miss another week of school.
 - Just a few days ago, he woke up with the whole side of his face puffy and swollen and had another fever, I took him into the Doctor immediately and she said she thinks its an infection of his salivary glands. He had to continue missing more school and was put on antibiotics. He finally seems to be feeling better.

Update on Laya

Laya worked hard to set the table for our Thanksgiving dinner. She takes great pride in creating, crafting and designing things :) 

Meet Laya & our Local news appearance!

We recently uploaded a Meet Laya video to YouTube. At the beginning of the video is a recording of her singing "Families can be together Forever." She sang that at my sister Ashley's wedding and I'm so glad we recorded it. She was only just turning 6 years old at the time.

Laya was super cute about doing the video, she picked out her outfit herself and told me exactly how she wanted her hair. The night before she asked me to write down the questions I planned to ask her, so she could plan out her answers. Then she spent a long time writing down all about GM1. I only kept a portion of what she had to say :) I had no idea what she was going to say until we filmed it. So much fun!

Also, we were on the Local News! It was a great experience. I think it helped get the message out to more people, which is fantastic. About a month ago I sent the Sweet Angels video in a Facebook message to Barbara Grijalva. Luckily she responded! She watched the video and said that she would love to do the story. She just had to work for a slot and get her superiors on board. They were so gracious about the whole thing. Here is the link to the story.  Tucson News Now Story

"Interview" with Eli

Eli is a very social guy, he really likes to be rocked in the rocking chair. He loves to do anything with his Mommy, Daddy, brother or sister. He does not like to be left alone to entertain himself. That is not very fun for him, he get's super bored unless he is interacting with someone! 

He used to sing at the top of his lungs, really high! (He imitates me almost exactly in this video) 

He used to dance like crazy! He still likes to dance....he's a really good dancer :) (Check out his moves above)

On Eli's 5th birthday we got a trampoline for the kids, he can't really jump on it anymore, but he used to love to get on it and bounce on his knees. Super fun! 

His favorite toy when he was younger (ages 18 months - 4 years old) was this baby doll stroller. He would push it around for hours, and as he started losing his ability to walk, it helped keep him stable for a while. 

Eli is a hard worker. Whenever he would fall down, he'd get right back up and keep trying. (We'd always say that if we were put in his shoes for a day, we'd be crying. But he is not a complainer. He just does his best.) 

We are SO lucky to have him!

Death of a loved One - Top 10 worst things to say

Close friends of ours just recently had a child die unexpectedly. It was a shock to everyone. My friends had already been through so much, due to a previous late miscarriage and another close death in the family. I didn't know quite what to say to them except, "I am so sorry and I just want you to know that I love you."

Since we are in a GM1 Gangliosidosis Facebook group, we hear about deaths of other children more frequently now. It's always difficult to know what to say and how to help. I found this article posted on the facebook page of Tucson's Tu Nidito (No Child Grieves Alone).

I thought it was well said and had to share it.

Direct Link to the Article - written by Laurie Burrows who had recently lost her husband.

THE TOP 10 WORST THINGS TO SAY TO SOMEONE IN GRIEF:

1. He’s in a better place. (A better place would be beside me now.)
2. Everything happens for a reason.
(There is no rhyme or reason for this kind of loss.)
3. Time heals all wounds.
(Time doesn’t heal all wounds, although healing takes time.)
4. Try not to cry. He wouldn’t want you to cry.
(He’d be bawling his eyes out.)
5. It is time to put this behind you.
(There is no timetable for grief.)
6. At least he lived a long life. If you think this is bad ...
(No comparisons, please.)
7. I know how you feel.
(Do we ever really know how someone feels?)
8. Let me tell you about my own loss, which is similar to yours.
(Please just listen and acknowledge my loss.)
9. Surely you’ll find someone.
(This diminishes the person’s loss and their loved one.)
10. You’ll get through it. Be strong.
(This tells people to hold on to their grief and not let it out.)
Now that we know what NOT to say to people who are grieving,
here is a list of thoughtful remarks that help those who want to know
the kindest thing to say in times of grief.

THE TOP 10 SUGGESTIONS TO SAY TO SOMEONE IN GRIEF:

1. I am sorry for your loss is the tried and true easiest thing to say.
2. The best thing one can say is “I love you.”
Actually a hug is the very best thing, since one losing a spouse 
does not get hugs on a regular basis.
3. I wish I had the right words to comfort you. Just know that I care.
4. I don’t know how you feel, but I am available to help in any way I can.
5. I am always a phone call or email away.
6. It’s ok to cry and it’s ok to hurt.
7. My favorite memory of your loved one is...
8. Please let me know how I can help you.
9. How are you doing this minute?
10. Say nothing. Just be with the person.

"At some of the darkest moments in my life, some people I thought
of as friends deserted me - some because they cared about me
and it hurt them to see me in pain; others because I reminded them of
their own vulnerability, and it was more than they could handle. But
real friends overcame their discomfort and came to sit with me.
If they had not words to make me feel better, they sat in silence
(much better than saying, "You'll get over it," or "It's not so bad;
others have it worse") and I loved them for it."
 - Harold Kushner, Living a Life that Matters

Sweet Angels (Cure GM1) - A mother's original song for a cure

A few months ago, I got an invitation from some other parents of children with GM1 to hold a conference call. We formed a task force to see if we couldn't push our fundraising efforts to the next level.

A day or so after the call, my husband said to me, "you should write a song to help raise funds for GM1." I had never even thought of that, or really believed I could do it. I thought, "That's nice that my husband believes in me....but why didn't I think of that?" I got excited and started working on it that night. I came to him with my first draft, of course enthusiastic about it and he said, "no, no, that is not a chorus, keep working on it." A few days later, I shared my progress with him. He said, "I like this, but not this, keep working on it." I went back to the song, crying and pouring out my soul in the process. I played it for him again and he said, "it's getting there...but this part needs a little something different". Then one day when I was playing the song for him, he began to cry and said...."It's perfect."

We then approached our friend Bodie Brower from Utah and asked him if he could record it for us during our next trip up there, (we already had a trip to Utah planned to see our family that next week). Him and his wife generously donated their time and resources to record it and we were so happy with the results.

We then began to work on the video. We didn't know what we were doing at all, but kept filming and working. We showed draft after draft to friends and family who gave us awesome feedback and advice, until at last we felt good about it.

We posted the video on YouTube 3 days ago and shared it on social media. Our friends and family have been so supportive so far in watching and sharing the video, downloading the song as well as donating. Our friends and family have already done so much for us, we'd really like to spread the song to a broader audience and have been working to try to get it out there. We are following any lead we can think of. Hopefully we can make a difference and help get GM1 research to the clinical trial phase.

We've set up all things social to help get this going:
If you want to help us spread the word, please follow, subscribe, download, share, like etc.

YouTube Video Link: Sweet Angels (Cure GM1)
Download on iTunes Sweet Angels
Download on Google Sweet Angels
Download on Amazon Sweet Angels
100% of money donated Here goes directly to CureGM1Foundation
Twitter: @marileekaymusic
Follow on Facebook - MarileeKayMusic
Follow on Pinterest -  Marilee Kay Childhood Degenerative Disorders

THANK YOU!!!

Eli's Birthday Fundraiser

Eli's Birthday Fundraiser was a success! I want to take a moment to thank everyone involved. It was amazing to see how many people truly love Eli.

With the crowdrise page, the silent auction and donations given at the party, we raised over $6,000! Amazing.....All of the funds went to the Cure GM1 Foundation, to be used towards research to cure GM1 Gangliosidosis.

So many friends, family, neighbors, school staff, coworkers, and medical contacts helped with the party and auction. If I try to name each person, I may forget someone. So I just want to say THANK YOU to everyone who donated online, by mail, came to the party, helped at the party, donated items or services for the silent auction, purchased items at the silent auction, helped me get the word out and/or donated items/services to use at the party.

 Thank You, Thank You! 

I know that budgets can get tight, so we REALLY appreciate your support and anything you donated or helped with. It was truly a special thing for me to watch and be a part of. It was amazing to see the love that people have for my truly angelic, unassuming, sweet, innocent boy.

Now for some pictures. I will let them do the rest of the explaining. Stephanie Moore took pictures of the kids ahead of time, and her and Candace Read both took pictures during the party. Thank you, Thank you to them and everyone else!!!

If you notice, Evan is not in any pictures, he got scared of some of the face painting and wouldn't calm down, so Janei (my friend) had to take him away from the party. Thank you Janei, Evan was really freaking out!